Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Other Life Issues
Cystic Fibrosis Foundation Compass can be a partner in managing your disease and everyday challenges.
Lung transplantation is expensive, even for people with health insurance, so having a financial plan is critical. It is also
a milestone in a person's life. With any milestone, many questions, concerns, and issues may arise. Compass can be your partner through the process by helping you locate a transplant center, understand transplant costs, plan for housing and
transportation during your transplant, find financial assistance for transplant medications, and plan for caregiver education and support.
A transplant does not mean a person's journey with CF is over. Compass is here for those post-transplant in helping to tackle other challenges that may be faced after surgery and beyond.
Life comes with many expenses related and unrelated to cystic fibrosis. Whether it's utility payments, home repair, or having enough food on the table, there may be resources that help cover certain costs. Compass can help you identify those
resources locally while also finding ways to lower other costs associated with your care to free up funds for these everyday costs.
If you are behind on your bills for living expenses, Compass may be able to point you toward resources to help. Case managers can help you find out exactly how much you owe and work with you to make a plan for dealing with financial issues related to living expenses. Along with contacting the utility company, Compass can also find grants that can help cover costs to help you with the issue as quickly as possible.
If you have trouble getting enough food or if affording groceries
is a challenge, you may be able to get help. Communities across the country
have resources and programs that have discounts on groceries, food boxes, and
food delivery. You may also want to talk with your CF care center social worker about what
resources might be available, such as your local Feeding
America food bank, that can help supplement your diet.
If you need help with a home modification or home repair, Compass case managers can spend the time
to look for local or state resources that can provide financial assistance.
Many states have programs that offer free help to people under a
certain income, persons with disabilities, and limited-English-speaking
taxpayers who need assistance preparing their tax returns.
Getting to and from your CF care center is difficult if you have trouble with transportation, such as needing gas, a reliable vehicle, or money for parking fees. You can see if your insurance plan can help by contacting the plan’s member services to see
if transportation is a benefit. In most cases you will need to call and schedule your trip at least 48 hours in advance, and there may be a distance limit. If transportation is not available through your insurance plan, there may be local and county
programs that can provide transportation services or vouchers for public transportation. In rarer instances, there may be other local organizations that can assist with gas cards or car repairs.
Losing a loved one comes with emotional and financial tolls. There may be some financial help through Social Security, Community Action, local private foundations, or even religious organizations and houses of worship. While financial programs and local resources may be limited, Compass can do the research for you during this difficult time so you can focus on your loss and not the financial burden.
People with CF as well as their family members often need help coping with the disease and its impact. Most insurance plans offer mental and behavioral health coverage, with in-network health care providers that specialize in mental health services. There may also be specialized support groups, wellness programs, and other resources available in your local community. Compass case managers can help research your mental health benefits under your current plan as well as search for available programs and resources in your area.
Genetic (or carrier) testing plays a key role in the diagnosis of cystic fibrosis and can help guide treatment decisions, but insurance coverage varies, so it can be expensive.
Many insurance plans will cover the cost of a genetic test. You can call your insurance company to see if this is a covered benefit and to learn of any copays or coinsurance due for the test. If your insurance does not cover the cost of a genetic test, a Compass case manager can help you learn more about low-cost national carrier testing resources.
The Mutation Analysis Program (MAP) provides free genetic testing to people with a cystic fibrosis diagnosis to help identify their CF gene mutations. To learn more about the MAP program please contact your accredited cystic fibrosis care center.
Whatever life issue you are facing, Compass case managers are here to listen and help you navigate through it. If there is an issue that we cannot tackle, we can help identify and connect you with organizations that may be able to. Contact Compass at 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email us at firstname.lastname@example.org. You don't have to do it alone.
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Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
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